Author: Latentexistence

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

I have labels. Lots of labels. I am a transgender woman, autistic, chronically ill, disabled, have depression and anxiety – and more. I used to have all that in my twitter bio because they made it easy for people with similar labels to find me and understand me. They’re not in my bio anymore, because of messages like this:

A troll attacks my labels

I have so many labels that a lot of people don’t believe they can all be real. Even when they do believe a label they don’t understand what it means.

In many parts of internet culture these words are a joke to be ridiculed. As a trans woman I am constantly erased and left out by people’s words. The people who make “triggered” jokes think it means to be annoyed or angry. As someone with mental health problems, triggered to me means to be left in a state of panic, heart racing, terrified, unable to move. (I have written about seeing a friend with ptsd be triggered if you want to a stronger example.)

Gamers in Overwatch joke about being triggered and misgendered

Unfortunately thinking these things are funny isn’t limited to 4chan and other shock forums. It is common in internet culture and for gamers in particular to joke about sexually identifying as an attack helicopter or being triggered.

There seems to be fewer arseholes playing Overwatch than some games – perhaps because they are put off by the diversity represented in the game – but nevertheless jokes about such things aren’t uncommon. Sometimes I call them out, but more often it is safer to stay quiet and hope they shut up. Recently I’ve been playing Overwatch with one particular group of people and spending time in their Discord chat. One or two of them do make occasional jokes like this. I usually ignored them but a couple of days ago a joke about anime “traps” and sexual orientation sent me into a panic attack and in my panic I left the server. My departure was noticed, and the server owner begged me to come back but the conversation did not go well. I pointed out that one of claims that I left because I was “triggered” was actually an accurate use of the word for once, and this was the reply:

Where do I start?

Faced with such a failure to understand, I gave up. How could I even begin to explain what I went through? Instead, I quietly left that community that I had found. I’m upset, but I can’t risk staying around where this can happen again. Trying to explain my mental state to people with no clue might as well be talking to aliens – where would I even start? They worried about not silencing jokes, but the price of that decision is excluding me.

Tonight the BBC will show a documentary that puts the discredited Dr Zucker centre stage to tell people why it is best to force trans kids to conform to their assigned gender and block their transition. This is psychological abuse that destroys lives and causes suicides and Dr Zucker’s clinic was shut down for it.

Last night BBC Newsnight decided to “debate” the uproar this documentary is causing, and featured Ray Blanchard, another discredited psychologist who came up with autogynephilia, the idea that trans women transition as a sexual fetish, trying to become the object of our own fantasy. This is the latest in a string of news programmes that have featured such discredited views as legitimate mainstream medical thought.

On Twitter Newsnight presenter Emily Maitlis asked the question “should primary school age children be allowed to decide if they’re ready for gender reassignment surgery?” despite the fact that children NEVER GET SURGERY, it isn’t available until post 16, usually far after 18 with waiting list delays. When this was explained she changed it to “should primary school age children be allowed to decide if ready for gender reassignment hormone therapy” but kids don’t get this either! The most a child might get is fully reversible puberty blockers (obviously not before old enough for puberty!) which delay onset of puberty until the child is older, though this itself is often another delaying tactic by cis doctors. By asking these questions she has further spread lies to provoke “debate” that is none of cis people’s business.

This is not a debate. This is not balance. This is a full attack on trans people and trans kids, and I am fucking furious. Thinking about how many people will base their opinions on this and how many parents will inflict psychological abuse on their trans children because of this has my anxiety rocketing back up to levels it was before my transition. Please, speak up against this. Complain to the BBC. Shout at anyone who will listen. Especially if you are cis, because trans people are being crushed by the relentlessness of this shit.

Government backdown won’t apply to all but is an opening

The Work Capability Assessment (WCA) is highly damaging to those of us who have to go through it. Despite this, both main parties have consistently denied that there is any problem, and claimed that the WCA is necessary to weed out scroungers. That might be about to change.

Firstly, Labour announced at their conference that they would scrap the WCA altogether. This doesn’t mean much right now since they are not in power, but it is a major turnaround for a party that introduced the WCA in the first place and has refused to even oppose most benefit cuts in the last few years. Jeremy Corbyn called the WCA degrading. Debbie Abrahams acknowledged that it makes people feel worthless and dehumanised.

It’s not all good, since they still refuse to oppose benefit sanctions, and used the same old language about work being the goal for everyone, but it is a start.

“If someone has a disease which can only get worse then it doesn’t make sense to ask them to turn up for repeated appointments. If their condition is not going to improve, it is not right to ask them to be tested time after time. So we will stop it.”

This is a huge reversal of policy. Continuous retesting was always the point of Employment Support Allowance (ESA) although there have never been enough resources to apply that to everyone.

Many people are celebrating this. However, there are big questions as the government haven’t specified any details. I’m not sure they even know yet. Reports imply that the exemption from retesting will apply to people with specific illnesses that are known to only deteriorate. If that is the case, then many people who have illnesses that are just as bad as those on the list but are not recognised as such, will miss out. So will people who have not yet been diagnosed, and that can mean people who are sick for years – or decades – before they find out the cause.

The more logical policy would be to apply this exemption to everyone who is in the Support Group, since this category is meant to contain people who have no prospect of improvement. In practice the Support Group doesn’t work like that, and people who will never improve are frequently placed in the Work Related Activity Group instead, thanks to DWP efforts to deny them support in order to keep costs down. If the exemption were to apply to the Support Group only then it would still be unfair to all those improperly placed in the WRAG.

Whether the Government decides who qualifies based on diagnosis, or based on support group, it will still be unfair. However, I do see this announcement as a big win. A Tory government minister said “constant reassessment is pointless” and “does increase their stress and anxiety levels” “causes financial insecurity” to describe repeated work capability assessments. That is a huge admission for the Tories, or even for Labour.

We can use this. We can attack the inconsistencies in the government’s argument. We can point out that the Work Capability Assessment is damaging to everyone. We can show that their descriptions apply to Personal Independence Payments too, even though they’ve spent six years attacking PIP’s predecessor, DLA as “abandoning” people so as to justify welfare reform and repeated reassessments. This isn’t an unqualified victory and won’t necessarily improve things for that many people (perhaps including myself) but this is a major event in the struggle against welfare cuts of the last few years.

The All About Trans project looks at creative ways to encourage greater understanding between trans* people and media professionals to support better, more sensitive representation in the UK media.

The project offers the trans* community a platform to speak out against the prejudice they may experience and promotes engagement between the wide diversity of trans* voices and the media.” – http://www.allabouttrans.org.uk/about/

Over the last two months one of the people who works with All About Trans and has a reasonable media profile has been making comedy videos where he plays a woman in an ill-fitting wig with facial hair. He has ignored criticism that it mocks trans women regardless of his intentions. When it was pointed out to All About Trans that this made him unsuitable to represent trans people they said:

We do not and have never claimed to represent the trans community – that’s not our remit.

I understand that All About Trans sees itself as merely a link between transgender people and media. Leaving aside that this isn’t quite true – the project has been cited by name in various media outlets and in the quote above refers to offering a platform – making connections like this is not and cannot be neutral. There is discretion and choice involved.

It doesn’t matter if All About Trans want to represent trans people or not. It doesn’t matter if we want them to represent trans people or not. The fact is, to the writers and presenters, and to the general public that see what is written and broadcast, both All About Trans and the people that they select are there representing trans people.

All About Trans puts forward a certain set of people to comment in the media. That selection is a choice they have made. When one of the people they have put forward has repeatedly made comedy based on prejudice against trans women, All About Trans have promoted a transmisogynist as representing trans people. In failing to condemn the material that hurts trans women, All About Trans have tacitly condoned it.

All About Trans cannot abdicate responsibility here. They are in a position of representing trans people regardless of whether they intended to or not, and the choices they make about who to promote matter. The actions of those representatives matter. If a person’s actions work against the group they are representing, they are no longer suitable to represent that group, and continuing to put them forward is therefore a statement about their actions. All About Trans have done good work in the past but in their response to this situation they are letting us all down. If the people running All About Trans do not think that the comedy in question is a promoting misogyny and transmisogyny then they should say so, so that we at least know where we stand.

This morning we received the final judgment in our appeal of the judicial review of the consultation for PIP. The appeal was not successful.

The full text of the judgment is linked below but I will quote here the key paragraphs that my solicitor pointed out.

Once it was accepted, as it had to be on the evidence, that the Respondent approached the 2013 consultation with an open mind, it seems to me that the challenge to the process as a whole must fail. It is explained in the evidence that all options were open as to the “Moving around criteria”, even if that meant changing the criteria for “Planning and following journeys” or looking for funding elsewhere. The reality was that consultees such as Mr Sumpter had every opportunity to present to the Respondent the difficulties that the move from a 50 metre benchmark to a 20 metre one would cause to them. It is clear that such opportunity was taken. In reality, it would have gone nowhere to contend in the consultation that the physically disabled should continue to be favoured at the expense of those who suffered other disabilities. No doubt none would have wished to present such an unattractive argument. Given the Respondent’s overall policy to make PIP available to a wider category of the disabled, new beneficiaries obviously had to come into the equation and there would have been no point in contending that they should be excluded.

…As I understand the law, consultation has to be fair; it does not have to be perfect. With the benefit of hindsight, it will no doubt often be possible to show that a consultation could have been carried out rather better, but that will not necessarily mean that it was unfair. That is what the judge said at paragraph 123 of his judgment and I agree with him.

I note that the judge did draw attention to the choice that the government made to frame continuing to help physically disabled people as unfairly withholding help from people with mental and cognitive difficulties. He did not, however, find it relevant that the consultation failed to admit the government decision to give new help at the expense of help previously available. The judge implied that people responding to the consultation only needed to talk about the difficulties we would face, not about the decision to take money away for use elsewhere.

The question I dread. The question I cannot answer. Not without losing face, anyway.

“What do you do?”

I sit on Twitter.

That’s what I do. All day. Mostly on a tablet. On a laptop or desktop PC when I am well enough. On a phone in bed when I am not. I’m there when I wake up in the morning. I’m there at 2am. I don’t really leave. I watch the stream of tweets flow past. And believe me, when you follow more than 3,000 people they really flow.

It fills the time between hospital appointments. The endless stream brings me news, jokes, struggles, friendship. It fills my browser with tabs to read. So many that I barely have enough time to look away from the stream to read them.

It’s not like I can do much else since I became too sick to work. Mitochondrial myopathy and a whole catalogue of other problems have robbed me of my concentration, my ability to go to my office, to talk, sit, walk or stand when employment demands it. I can’t do the things that employers are willing to pay for anymore, but I can tweet. And I do. A lot.

I still crave usefulness though.

“What do you do?”

I tell people what I think will make them see me as like them. As a productive member of society. I tell them I am an activist. A welfare and disability rights campaigner. I am, too. Twitter has got me involved in campaign groups, put me in touch with people doing anything they can to get the truth in front of media and MPs. Twitter has found me radio and TV interviews and eventually lead to me being part of a Judicial Review over PIP. Through Twitter I have listened to the despair of many sick friends when they try to get the help they are supposed to get. I advise them, tell them where to find the hidden rules, how to get help to get help. Through my own trivial tweets, I am told, I help others to realise they aren’t alone, that their illness isn’t imaginary. They have done the same for me. I have made people aware of injustice, of the fights against that injustice. I have shown them protests and struggles. I have done more than I ever did when I had a nearly functional body and brain.

But all of this takes a toll. I am not well. I am very much not well. Physically and mentally I struggle through every day, and these days, Twitter is an endless bombardment of despair. For me Twitter suffers from having split purpose. It is a space to meet friends, sure, but it is also a public speaking platform. It is a news stream. Since all my friends care about the horror of the world, even when I want to withdraw from that to recover I still see what they are talking about. Twitter is a place for intimate sharing, for larger social circles, for staying aware of what is happening, and for speaking out. The biggest problem comes when a tweet meant only for one of those purposes crosses over to the others. When a minor personal gripe to a close friend becomes an international phenomenon embedded in news stories everywhere.

Over the last few years my tweets have attracted attention. Not huge by media standards but still enough that I will often get 100 retweets on something I said. I am pretty good at accidental anger that people share and amplify. If I am on a roll I can have several tweets like this on the go at once and that makes my notifications… interesting. My tweets about illness attract replies from friends, of course, but also from more distant acquaintances. They often attract unwanted advice that is irrelevant or I have already tried and discarded years before. My political tweets often receive insults or abuse from right-wing people who have come across me being retweeted. The questions, advice, insults and abuse all make me panic and retreat from Twitter. Well, that’s not quite true. I have started retreating to a private locked twitter account which just a few friends are able to see. I don’t think this is uncommon either. Quite a few people have a locked Twitter account alongside their public one, especially people who aren’t straight white cisgender men.

Admitting to having a locked account will make some of my followers sad and for that I am sorry, but this raises another aspect that I am struggling with. I have been very open about physical and mental illness and as a result I have far more people emotionally invested in me than I could ever keep track of. I feel guilty about this every day because I wish I could return the friendship shown to me. Sometimes even the friendly responses are too much for me to deal with and so I have said less about personal things on my public account and only put a few of them on my locked account instead. When I finally managed to admit and talk about my gender dysphoria I did that almost exclusively on my locked account – which is messed up in itself because I have been unashamed of physical and mental illness yet too ashamed of my gender to talk publicly.

I am not sure if there is any solution to the problems I have mentioned. I am bad at segregating my tweets between accounts and in any case I feel useless when something I said could have helped someone else but stayed hidden away. I have thought about deleting my public twitter account but that would be a waste of something that can do a lot of good. I have considered unfollowing everyone and then adding back only a few people so that I see less awfulness but that would upset many people and not address the replies that I cannot deal with.

I am not asking for advice – as should be obvious if you just read this blog post. I guess I will continue with Twitter, continue to raise my voice about the problems that I see, because that is what I do.

A few months ago I very quietly announced to some of you that my gender is nonbinary and requested that people use gender-neutral they/them/their pronouns to refer to me. I also said I don’t feel like I’m a woman and I don’t intend to transition or take hormones.

Turns out I was wrong. I am a woman.

Some of you will have already guessed as much, not least from my increasing comments about gender and my social media posts about transgender issues. On the other hand, some of you definitely have not seen this coming. My gender has been a matter of intense distress, self-examination, questioning, despair and anguish – as those friends kind enough to listen to me know all too well. I didn’t know (or didn’t admit to myself) what I was before the last few months despite years of questioning, but now that I do know, the problems I faced in the past make so much more sense.

Now that I understand more about myself it is time for me to do something about it. I have asked my GP to refer me to a gender identity clinic and I am starting out on my transition.

This time last year we took the Department of Work and Pensions to a judicial review to decide if they properly consulted about cutting help for people who can only walk a few metres.

The original consultation did not make clear the plan to cut the qualifying maximum distance from 50 metres to 20. In quite strong language for a judge, the court noted that the consultation was “Mind-bogglingly opaque”, “At best ambivalent”, and “Convoluted, inherently unclear, ambiguous and confusing. No construction allows for full coherence.”

Nevertheless, the court found – very narrowly – in favour of the government and said that the second consultation, started after this judicial review was in motion, was enough to make things right.

This week we are back in court to appeal that decision. We argue that the second consultation could never have changed the decision that had already been made. The hearing will take place in the Royal Courts of Justice in London from 10:30 on the 14th and 15th of July. The judgement will follow a few days later.

It is frustrating that this case is about whether the consultation on PIP was fair rather than about the cut itself, but the courts cannot decide on government policy. As part of their defence the DWP pointed out that they are fully aware of the impact of their policy, and are removing DLA from “individuals with genuine health conditions and disabilities and genuine need” and “removing or reducing that benefit may affect their daily lives.” The DWP did do a consultation on their policy though, and that consultation wasn’t fair, so that is what we are fighting.

My Motability car, which I stand to lose if denied the high rate mobility component of PIP

Background information

As part of the Welfare Reform Act 2012 the government replaced Disability Allowance with Personal Independence Payments. Their main reason for the change was to introduce repeated frequent testing to see if claimants have miraculously healed. They also changed the maximum distance that you can walk and still qualify for help towards regaining your mobility. Under DLA the cutoff was recognised to be 50 metres. Under PIP it has been slashed to just 20 metres. This means that if someone can walk more than 20 but less than 50 metres (subject to a few caveats) then they will no longer get the highest amount for the mobility component of PIP. Assuming the person still qualifies for the lower rate of mobility, this is a cut of £35.65 per week. But worse than that, the higher rate mobility component is a gateway to all sorts of help including the right to lease a car or wheelchair through the Motability scheme. As a result of this cut more than a hundred people are losing their car every week, and many thousands more will follow when they are reassessed for PIP. Losing independent transport means losing independence and access to services.

Today my sister used a wheelchair for the first time. (We share the same inherited mitochondrial condition.) Her husband has little experience of pushing a wheelchair so I tried to give him some tips, which resulted in what I have written below. Believe it or not there is actually some skill involved in pushing a wheelchair and keeping the person in it comfortable. These are just observations from my own experience of being in a wheelchair pushed by someone else, but everyone is different. If you’re pushing a wheelchair for someone new then you should ask them if they have any preferences.

Communicate. Ask if there’s anything you need to know first. NEVER touch or move a wheelchair without permission.

In 1992 my husband, Kevin, was working as a self-employed plumber and heating engineer. We were living in a private sector rented house with our three children aged 14, 9 and 6; and I was pregnant with our fourth child. When I was in my sixth month of pregnancy Kevin sustained a severe back injury, which left him unable to walk or stand up. After a six month wait Kevin was operated on, after which he could walk upright. However it became apparent that his back was not completely healed and it transpired that there was considerable scar tissue on the nerve, causing severe pain and limiting the distance he could walk and the amount of time he could stand. This scarring and pain was, we were told, permanent.

Following a face-to-face medical examination Kevin was awarded Disability Living Allowance (DLA), initially for a year and then, after another face-to-face medical examination by a Doctor, he was given what was then called a lifetime award. This enabled him to lease a car from Motability (I am not able to drive so our previous old banger of a car had gone). He was also awarded Incapacity Benefit, also with a face-to-face medical assessment. We claimed Housing benefit to help with the rent.

Kevin was not able to return to the plumbing work for which he was qualified so it was necessary to re-train. He studied part-time at our local F.E. College and obtained a BTEC National Diploma in Computing and Electronics. Despite his severe dyslexia he passed with distinctions in all subjects and was given the prize for best student on his course. He then obtained a Diploma of Higher Education in Computing. With these quantifications he chose to stop the Incapacity Benefit, despite it having just been renewed, and return to work part-time, eventually increasing to full time. Incapacity Benefit was replaced by Disability Working Allowance (DWA). None of the study or work would have been possible without the Motability car.

Over the years the DWA was replaced by Working Tax Credit (WTC) with a Disability premium. After 10 years working as a computer repair engineer for one of Britain’s leading small computer manufacturers he was made redundant when the company folded. There followed a year of JSA interspersed with very low-paid contract work.

Eventually he was encouraged by the Jobcentre to go self-employed. He started a computer repair business in partnership with our eldest child, who was also chronically ill, and who unfortunately became too ill to work, so Kevin continues as a sole trader, working from home. There is a steady trickle of work, but not enough to provide more than a very meagre income. It was not possible to get any finance from the bank so we put into the business all the money we could muster from the redundancy payment and a small inheritance from my parents. (Incidentally this inheritance put us just over the savings limit for Housing Benefit and they deducted an amount from our payment for two years,until we could prove that we had used up all the money.) It has taken 3 years to show a very small profit, rather than a loss. We are sustained by WTC, DLA and Housing Benefit. The computer business involves driving to customers and so is dependent on the Motability car. I have the same chronic genetic illness as my children and am not able to work, but I do not claim any benefits in my own right. We have become experts at living frugally and making economies.

The future
The Benefit changes that will be affecting us in the near future are Universal Credit to replace WTC and Housing Benefit, and PIP to replace DLA. As we now live in a housing association flat we will also be affected by the ‘Bedroom Tax’ when our student daughter leaves home.

Universal Credit will be paid monthly and will be calculated according to the claimant’s weekly reporting to the DWP of hours worked and income received. According to the government website self-employed people will be assumed to have reached a ‘minimum income floor’. This figure will be used to calculate the amount of UC awarded.

“If there are no limitations on the number of hours you can work, the minimum income floor is likely to be the equivalent of you working 35 hours per week at the National Minimum Wage for your age group.”Universal Credit and self-employment

As Kevin does not have 35 hours of work per week, and certainly does not pay himself anywhere near the national minimum wage, his self-employment will become unviable.

Kevin will eventually be migrated from DLA to PIP. With the arbitrary reduction of the walking distance which qualifies for the higher rate mobility component from 50 metres to 20 metres it is extremely likely that Kevin will lose the Motability car. This will also render his self-employment unviable as he will not be able to drive to customers. It is my dread that he will lose the benefit altogether, which will remove the ‘passport’ to disability-related premiums and possibly the Blue Badge for parking.

It is extremely unlikely that Kevin, as a 62 year-old man with dyslexia and restricted movement, will be able to find a job

So where will this leave us? Kevin may be able to qualify for ESA, probably in the work-related group. If not, he will have to claim JSA. In either case, trips to the Jobcentre will be necessary. He has no means of getting there other than by using a wheelchair. He is not able to self-propel, so I will be pushing him there. My illness restricts my walking so the wheelchair will be fulfilling the function of a Zimmer frame – there will be pain. Work-related activity is unlikely to accommodate Kevin’s disability, which may well lead to benefit sanctions. The bedroom tax will eventually be applied. Shopping will have to be by home delivery, assuming we can still afford an internet connection. Food will become more expensive when I am not able to continue my daily forays to the reduced produce shelf in the supermarket or shop around for the cheapest deals. We will not be able to afford heating. We will not be able to go anywhere without help. Holidays, visiting our grandchild, church, any kind of excursion will be unattainable. We would no longer have a life if it were not for our close family and good friends.

This is just one story of a family affected by the Government’s austerity measures; there are many more and, as in the recent protest at the House of Commons about the removal of the Independent Living Fund, we need to make our voices heard before it is too late.